Rare Disease Report

Free Smartphone App for Neuromyelitis Optica

NOVEMBER 12, 2015
Guest Post by The Guthy-Jackson Charitable Foundation
Earlier this year, Google released groundbreaking statistics suggesting that Internet browsing on mobile phones has overtaken the traditional desktop computer. It is no secret that smartphones and the internet have the potential to reshape the medical industry as we know it, and no one knows this more than The Guthy-Jackson Charitable Foundation (GJCF), a nonprofit dedicated to solving Neuromyelitis Optica (NMO).
When the foundation was first formed, information regarding NMO was practically non-existent. Through the use of the Web, the foundation sought to connect the disparate groups of advocates and stakeholders in NMO, giving them a common ground to explore information and share ideas. The foundation continues to embrace technology as a means to inform, educate, and support all sides of the NMO community.

An International Effort

The process that lead the team to developing a smartphone app started, simply enough, with a small piece of paper meant to fit in your pocket. ‘Pocket cards’, as they are often called, are small, sturdy notecards used by clinicians to keep important information within reach. Because they fit easily into a lab coat pocket, doctors keep them on hand to quickly review diagnostic criteria, severity scores, or other supportive guidelines for treatment.
For the last two years, the International Panel for Neuromyelitis Diagnosis (IPND), a global team of experts, has set out to identify, critically assess, and integrate the available evidence relevant to the diagnosis of NMO as compared to related diseases. During this process, the IPND developed the new 2015 consensus diagnostic criteria for NMO and NMO Spectrum Disorders (NMOSD), published as an open source article in Neurology and available for free online. These new criteria are anticipated to improve diagnostic accuracy of NMO/SD and other autoimmune diseases and speed appropriate therapies.
As the panel was working on strategies to disseminate this new information, they approached the GJCF to create an IPND Diagnostic Criteria Pocket Card (read more about their efforts and access the card here). As the conversation continued, doctors discussed a desire to access that information quickly and digitally.

Meeting the Needs of the Future

As the GJCF began developing what would eventually become the app ‘NMO Resources’, we reached out to both the medical and the advocate communities to discuss how current needs could be met and develop a program of beta testers. These supporters of the project raised awareness for everything from usability in the clinic to accessibility for people with impaired vision. Their vision helped expand the app from a simple diagnostic support tool to a digital pocket guide containing everything NMO.
The result is a comprehensive online resource that offers information, free research publications, access to our library of 100+ informational videos, support group connections, our patient resource guide, clinical trials, Mapping NMO, and of course, the pocket card containing the full diagnostic criteria.

Learn more about the new app ‘NMO Resources’ and download it for free today.


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